I would like to recommend Dr John Reinisch, Head of Plastic Surgery at Children's Hospital of Los Angeles. He removed my daughter Lindsey's hemnagioma in February. It looks fantastic! We are very pleased with Dr Reinisch's work, and highly recommend him to everyone! If you would like to see his work, check out his website: www.hopeforkids.com you can also email CHLA directly from the website for more help and information. If anyone is interested in seeing before and after photos, or just want more info about my daughter's surgery, please email me.

sarge

05-06-2004 01:43 PM

AVM right leg

Hi
This is first time I have found a forum for AVMs that are not on the brain or spine.

My daughter will be 17 this month and has an AVM on her right leg around the knee area. She has had schlerotherapy (I think this is the correct spelling) on three occasions. This helps for some months and then the AVM becomes extremely painful again. She is at this stage at the moment and upset because she has major exams in a few weeks time and doesn't know how she will stand the pain.

Can anyone suggest any tried and tested pain relief?

We live in the highlands of Scotland and do not know of anyone else with this condition.

I would love to hear from anyone who can offer any help or advice especially if there is anyone from Britain reading this.

biker

05-06-2004 07:41 PM

Re:Recommending doctor

Hi! If you will look at the left side of the screen in the resources section, there is a "Find A physician" area that has a number of doctors in Great Britain. Since you have the internet, you might also consider e-mailing Dr. Milton Waner, in NYC. I know that he trained a # of surgeons from the UK and he might be able to direct you.

My daughter has a lymphatic malformation. She has never mentioned it hurting except after surgeries and once when she had an infection. I can imagine an AVM involving a limb would be painful due to the veins being involved.

Mary Ellen

lookingforinfo

06-17-2004 10:16 PM

Re:Recommending doctor

Hello,

My son has a venous malformation in his leg. Has your daughter had a MRI? If not, she should have one. My son's has now grown into the knee joint, and he will be having sclerotherapy and a resection. The MRI would be able to show if your daughters has grown into a spot where it shouldn't be. We go to Boston Childrens Hosp, they are the best!